So this is the new year...

I am never big on new years resolutions, for me -- I like to think I should keep chipping away at my good qualities, or ones that better myself, and let the poorer ones fall by the wayside.  So here are ones I hope to enhance this year :)

 .Resolutions.

Get Strong(er)!: Physically, and especially emotionally.

Allow myself to be giddy: grateful, proud, appreciative for the little things.

(especially, be more proud of my accomplishments)

Laugh more. The more I realize I laugh, the less I cry over the pain of the world. Being silly and goofy makes me more relaxed, calm, and is a side of me I've missed for a really long time. 

Luckily, it's coming back :)

Smile more. for everything that I have been through (and survived) and for everything that I will go through. I am so grateful to be here and have each one of you in my life; therefore, 

I should show it!

So there you have it loves!
I have a feeling 2011 will be an amazing year -- I mean, starting out with a remission, I don't see how it couldn't be :)

The invites to the blog will be sent out (hopefully) by the end of the month. I'm a bit behind, as I've enjoyed all of my travels this month from Greece, to New England, and the lovely Pennsylvania Mountains.

So, if you wish to continue reading this blog once it goes private, again.
Please: click here and follow these directions. Happy New Year all!

xoxo,
B!

l'arte d'arrangiarsi...

So much has changed and transformed within a month, that I, myself, can't even believe it.  I will update more, when I catch my breath from my weekend getaways, and school but for now here is a quick recap of the last month:

• I was accepted into school, as a transfer student and started classes last week. I am loving being back!
• Finally found a yoga studio that fits my personality, and my body is thanking me everyday. 
• The Bendamustine-chemotherapy has been extended to only once a month. I am in heaven. I haven't gone this long without seeing medical personal since summer of '09. 
• There haven't been any night sweats, fevers, or any other symptoms since my first dose of this chemo. How amazing is that?
• I finally set up a PayPal account to the 'Rebekah Fund' which is over on the side bar. I despise asking for money, but if you would like to help me and my family in ANY way, we'd be so ridiculously grateful for your donation to my medical travel and accomodations. 
• I was able to visit New England two weekends ago, and catch up with amazing friends.  Had the energy to drive up on a Friday night, come back sunday, and then go on to do a full week of classes -- I haven't felt this amazing in a year. 
• I have definitely gained weight, and can't wait to see what my weigh-in will be, come September 16th, when I have my next treatment. I'm hoping to at least hit 105 lbs, since my 100.5 lb weigh-in, in August.  
• Three of my dearest friends, my brother, and I are planning a trip to Greece over my winter vacation to celebrate, ME, surviving four years with cancer. I wonder what we'll do for my fifth anniversary? :) 
• After losing my hair to the SGN-35, my baby hairs are finally sprouting! 
• I am back to being Bekah, for the time-being. It's so nice to finally see myself again...
• I am sucking the marrow out of life, and am grateful for every single second of it. 

Sending love to each and every one of you,

xoxo

B!

Summer of Bekah!

Well, for me at least ;)

This is my official, summer vacation for the first time in three years.

I worked my little butt off this semester -- which definitely paid off. And LOVED every second of it. In fact, not seeing some of my favorite future-therapists in classes these last two weeks, has left my brain much less stimulated (miss you ladies!). 

However! Now is time for fun in the sun.  This afternoon I am high tailing it down to Miami, FL to meet up with two beautiful women, Adrienne and Alison. All in all this is a MUCH overdue visit with two of my favorite people who continue to fight this disease, just as I do.  After some R&R with the girls, I'll then be driving to lovely, Orlando for a day in Disney with friends.  

And THEN, after two and a half years, I'm returning to good old Jacksonville, Florida. My kids (who I taught two years ago) are graduating elementary school next weekend, and with it being my last time before they all part to separate middle schools, I wanted to give them one last hug.  So, I'll be seeing old co-workers, parents, and students.  I'm sure it'll all be very, very, bittersweet. But totally worth it. 

After my time in Florida, I head back to the bean for a quick weekend class..

and then, will spend a little over a week in PA visiting the moms -- spending some time at the Jersey shore with my family, and basking in the glory of summer. 

Although I'm looking forward to my summer classes turning up the heat in late June. I am ready to be a beach bum for a few weeks. And see some of my favorite faces. 

As for the cancer talk -- some things are in the mix, to change treatments: it appears that I'll be ending the LBH clinical trial in the next month and starting Doxil up sooner than anticipated. However, all of that will be attended to, once I return from my vacation. Once again, if you would like to continue reading my blog, please click here, and read. 

For now! I am officially declaring -- this the 'Summer of Bekah' and I am going to enjoy every minute of it.  You should too. 

  Remember to hug the ones you love today, and everyday. 

Sending Love, love, love...

B!

--

(Please note: We lost another member of our hodge army this week, please stop over to the Parr's Blog, and leave a message, as Pat (James) passed away Tuesday afternoon, leaving behind his young wife, two year old son, Josh, and lots of family and friends who are grieving.)

Just call me, Lucky.

At this point in time, I'm comfortable enough to say, that in the worst of the worst of situations. I am the luckiest girl in the world. The last two months I have been overwhelmed with an amazing program at Lesley. Although Education, always felt like 'my calling,' I never seemed to connect with my peers very well in the Master's level. Being, one of the oldest woman in the program.

Now, as I am one of the babies, I am incredibly humbled and feel such gratitude towards my peers and incredibly introspective professors. My classes, the challenges, the papers, and the discussion is rich, thought-provoking, and raw. Real issues, ethical questions, my mind finally feels challenged in a way, I didn't realize was possible. Although I have a zero psych background, this path makes me feel at home. In some ways, I knew I'd get to this here (maybe twenty years from now), but I'm glad I'm somehow, I got here faster then expected. And am so overwhelmed with the community developed within each classroom. To say that I'm happy, would be an understatement. And, when friends call me a nerd or a work-a-holic for focusing my attention this last month on my studies and internship interviews -- I'm okay with it. This is not a program, of just books here. This is program for and of people. This is a program, in which we are all making a difference, and I'm grateful to be part of it.

Aside from that, my midterm papers are pretty much over. Which, lets me breathe a bit more. Still lots of work, but I have had the beautiful opportunity to spend and be spending time with my gorgeous friends. For the first time in three years, I went and celebrated my birthday with an amazing gift from my uncle and aunt, who invited me to their beach house in Florida with three of my a-mazing girlfriends from Doylestown. I have never, ever, been more relaxed in my life. It was heaven.




Aside from our four-day-vacation. Midterms. And up-coming interviews for my internship for next year. I have been spending a decent amount in the hospital this week. Which is okay. But, thought it would be important to lend some advice to those who are on the clinical trial track. Although, in the beginning the LBH589 was very stricked, and I didn't have a lot of flexibility my doctors and I have been attempting to 'bend the rules' a bit. For instance, I was suppose to have a CT scan about two weeks ago. But, with the pressures of coursework last week and this week. I asked to propose to the drug company if we could push it off a bit. In response, they accepted this request. Sometimes -- like a wise woman once said (Alison ;))... All you have to do is ask.

We are also, experimenting. At the moment I was on 15mgs of LBH, feeling a bit nervous for this upcoming scan since the last scan did not reveal any reduction (yes, I probably should have told you all, but stable is still good, at this point in time). I asked since my plateletes were going up, and doing well, if we could up my dose a bit. I know what you're thinking -- who asks for MORE chemotherapy? Well, me :) If I get thrown off this trial, most likely, I will be entering a tougher chemo regimen, so, if my body can handle a higher dose in chemotherapy, on this trial. I will take it.

Thus, on Friday, we began on 20mgs. The catch? The drug company needs blood tests from me every week. So instead of spending one full day at Dana Farber every other week -- it looks like I'll be there a bit more until my body proves it can handle the 20, or not. I'm okay with this for now. As, a scan is coming up soon. I guess I just want to push my body as far as I can, in hopes that two extra weeks of a higher dose will reduce some of these tumors -- who knows right? As far as side effects, I'm trying to suck it up. But my body can already feel the difference as my fatigue has reared its ugly head again, and the nasea has returned. But, sometimes, risks like this are worth it. You give a little, you take a little. You have to strike that balance.

So, time will tell. Other then that. Things are wonderful -- which is the reason for the lack of updates. I am attempting to not think about cancer, unless I absolutely have to. Which has taken time to get used to, but every day, I am learning more, and coping with this to the best of my ability. If not for myself, in hopes that other young adults with a chronic cancer can see -- it can be done. And you can still live and accomplish your goals.

And, on a side note -- who can seriously think of cancer. When you have these gorgeous locks? Have I mentioned I LOVE having hair again? Hope all of you are doing well, and enjoying the sunshine in your life, as much as I am.

Love, love, love,
B

No news, is good news.

Recently, I have been receiving an overwhelming amount of e-mails, voicing concern.
Just to make everyone aware, for now, no news, is good news.
Promise to update soon.





Sending Love,

B

Regen

Recently, I've been captivated by a young woman by the name of Selma Meerbaum-Eisinger. Selma was born in Romania (now Ukraine). She was this frizzy haired, freckled nosed, young woman who started writing poetry at fifteen, during the Holocaust. At Sixteen, her and her family were sent to a labor camp in Ukraine, called Michailowka. In which she died, within the camp at age 18.

The preface of this specific book (Harvest of Blossoms), describes Selma, the person she was. The writing she created, the sweet young-love, in which she dedicated most of her poetry to. And, how her writing survived, the labor camp, was passed through friends hands, from Tel Aviv, and eventually was descovered by a small German Publishing House. Another young life, cut short, but her words, thoughts, beauty for the world, even with all of its misery can be found within almost each of her poems.

Although many words touch me, it has been a difficult week or two, for some of my favorite people. Who are in the cancer trenches, themeselves. This week, a few friends including Adrienne, were taken off the MGCD0103 clinical trial.

Another, Hodgkin's all0-transplanter, Eric, recently is struggling with not being able to produce bone marrow. Which means, more chemo and treatment for him. Both individuals, and moms are incredibly strong, and I believe will take steps they need to continue both Adrienne and Eric's steps to manage their situations. But, I share their frustration watching both young adults fighting for their lives... in some form.

And lastly, a dear, young friend of mine who I became close with during this summer while we both entered transplant at Upenn, Scott Reeder, at age 28, passed away this week due to sudden complications after his cancer returned for the third time. And, a part of me, has yet to even accept this news..

Beautiful people, whom I care for dearly, are suffering. And when I come to these points, to these weeks, in which life does not seem fair. In which, I feel as though, we've all fought, enough. Because, in truth we have. In which, I want all of these individuals' pain, and worry, and anxiety, to subside. I usually turn to someone. Not for answers, but maybe... for hope.

To another frizzy haired girl, with freckles, who articulately expresses, what I wish I could send, with my love, to all of you.

The rain has slowly and softly made its way through Boston this week, and will continue through the weekend, so, I found this poem very fitting.

Rain.
regen.

You walk. And suddenly the pavement's wet
and suddenly the green of the trees is new,
and a smell like that of burnt hay hits you in the face,
which, hot and pain, eagerly looked forward to the rain.

The grasses, which all dusty, tired, and weak,
already have bent down to meet the ground,
joyously see the swallow
flying near and suddenly seem filed with pride.

And you walk on.
And you walk on.
Walk lonely and alone
and know not whether you should laugh or cry.

And here and there, some rays of sun,
which shine - as if the rain were none of their concern.

- Selma Meerbaum-Eisinger

Fighting cancer, struggling with relationships, losing friends, stressed with future plans, with finances, with life, in general. We all have our ups and downs. The important thing to know though, is, no matter how much rain. No matter how much pain, Selma was able to see life, the way I want to. She was able to see those sun rays...in nature, in herself, in her friends, in life.


And my hope is, while I'm still here....




I continue to see and embrace those rays too.

Sending Love,

B

LBH589, oh how I despise you....

To literally cut a long, three week-story, short. LBH589 has been nothing but hell. Emotionally, Physically, Psychologically, just everything has been very, very difficult. And it being Sunday, I am not looking forward to this next week.

To summarize, my schedule at the hospital last week was as follows:

Monday 7am-7pm
Tuesday 9am-12am
Wednesday 9am-2pm
Thursday 9am-12am
Friday 7am-4pm

It was, to put it bluntly, just hell.

Next, were side effects. The LBH itself are two small pills, 40mgs. The dose is taken on a M,W,F schedule. Every single M,W,F. You'd think something as small of a dose as that could not affect your entire body. But, in this case, poison is poison. Whether it be infused, or swallowed. And boy did I get a good kick in the butt, reality wise.
Side effects listed on the trial were: nasea, vomiting, fatigue, GI issues, shivers, fevers, skin rashes, insomnia, anorexia.

I can tell you out of the nine that were listed for 'minimal' side effects, I had eight of them. My doses would start at 7 or 9 am, and four or five hours after my dose I would begin to have flu-like symptoms. The nasea, was the absolute worst, so we tried to focus on that issue first hand. Since zofran (a common anti-nasea drug is not allowed on this study), and compazine (which I'm allergic to) are out of the picture. After dicussing things with my two favorite men in my life (My uncle Jay, and my good friend Darrel, and I think you mentioned it too Alison!), it seems that Tigon (which has been discontinued) and Kytril are working the best.

The GI issues, are ones I wish not to talk about, trying to find a balance between imodium, and Senokot, leaves me shuddering just thinking about. And, pain in my lower abdomen, that makes me want to sleep all day.

And the flu-like symptoms are usually for a straight 24 hours, a few hours after a dose of the LBH. This means, the following day (Tuesday night), I begin to feel better, only then to return to swalloing the pill the next morning, and returning to the same cycle. In addition, I am force feeding myself, as I've already dropped around 5-7 lbs in the first week. Due to the nasea, GI issues, and never being hungry.

There is a lot more, to all of this as well, but those are the nuts and bolts of my treatment so far. This week I will only need to go in mornings of Monday, Wednesday, and Friday. Even though those are just the physical side effects that I've described, being back in the hospital again, surrounded by chemo and cancer, has side effects of its own. But, I'm working through them.

I've realized, it's no longer a sprint, at this point.
But a long, uphill, marathon. To where? I'm not sure.

My hope is that as treatments, and medications are sorted out I will have some kind of quality of life, since all of this week was either spent in a hospital bed or my own. And that the side effects will become more tolerable, as will the idea of being treated... for the rest of my life.

I realize that this is a very 'non' Bekah update, not really explaining my emotions or thoughts. I've just literally had hundreds of emails, asking how I am doing, and what the news was of the new trial. So, I felt the need to throw all of this out there.

On a positive note,
At least there is hairgrowth, to speak of....


Hope October is being wonderful, to all of you.
And wherever you are... you're enjoying fall.

B

One foot in front of the other...

Even though I feel somewhat calm about my decisions thus far for treatment, there are still calls, appointments, and schedules to be set.

On top of that I started my second to last semester for my Master's program this week.

So, I'm a teeny bit stressed.

So... what has she decided? Might you ask:
We will start with a clinical trial at Columbia, with Dr. O'conner, most likely starting next week.

However, there has been a major hold-up. The pathology slides that had been sent out to Dana Farber, were lost for about a week. We finally found them in doctors office at DF, and they've been sent back to Upenn, as of yesterday. Thus, we can finally send these slides to Columbia (Where Doctor O'Conner will be treating me). But, we can't set the wheels into motion until they have all of my information.

Most likely, next week I will commute from Boston to NY. (Once a week for about 4-5 weeks), to start this trial. Since the SGN-35 Trial (CD-30 Antibody drugs) is closed at the moment, my decision on what class of drugs to start with was fairly easy. So, we will start with the H-DAC drugs.

This specific trial is: PXD101, it is through oral pills; however, it is a study focused on solid tumors. Hodgkin's disease however, is a liquid tumor. So this trial is for 'lymphoma's.' I'm optimistic under Dr. O'conner's care, but my gutt tells me, that I have a better shot at maintaining this disease under the anti-body drugs (SGN-35). Only time will tell. Thankfully, I do not have any major B-symptoms, except for a small drop in weight.

I know this is horribly confusing. Just know, I have a plan A (PXD) and a plan B (SGN). My plan B will not be available for me until sometime around November or December. Since that specific trial is closed at the moment. But, it will re-open in a few months.

So for now, we start with PXD, which is a phase II trial, that focuses on lymphoma, and under great care of a doctor. We will scan once a month. After the second month, if there is more progression of my disease than not. I will discontinue this trial, and hopefully just jump into plan B. If the disease progresses too much, we might need to go back to chemo for a month. But, lets not get a head of ourselves.

I hope my lack of energy doesn't translate into negativity. Because that is not the case. It's honestly, just been a very, very, draining week. Making calls, starting classes, researching trials, being on the phone for hours trying to hunt down slides, talking to doctors. But know, I feel comfortable with what I have in front of me. I just wanted to update, to let everyone know what the next few months will look like.

Plan A: PDX
* Once a week for 4 to 5 weeks in NY, to check in with O'conners team, blood work, tests, ect. (Then only once a month, after we get through the first month)
* Oral pills, 14 days on, 7 days off.
* minimal side effects (fatigue, nausea, gi issues)
* Scans every four weeks

Things that have nothing to do with cancer that I am thankful/happy about

* classes that I love
* being with friends, and welcoming fall with open arms
* starting to volunteer as a literacy aid 2-3 times a week starting in october
* signed up for a yoga class
* knowing, i'm still here. and will be, for longer than most think.
* and hair! For those going through transplant -- this is just shy of five months out.



Personally, I am taking off the next few days from cancer (can she do that?) heh. Yes, I can. Going to focus on my first paper and readings of the semester, fixing up my apartment, going to a sox game, and relax before Plan A begins.

I'll share more about the trial, next week.
Sending out my love
to all of you,

B